Or, One Man's Long Fight With Both EDS and NHS.

transability

So, here’s a bag of worms that I’m going to tip out all over the floor and really work into the carpet.

Body Integrity Identity Disorder. It’s rare, or it’s presumed to be rare, and I first encountered it a long time ago through BMEzine and the body modification world. The stories would show up a few times a year, usually anonymised, of someone having gone through with cutting off a digit, or a limb, and how miuch happier they were in the aftermath, getting used to existing without the offending body part. In the context of a site where things like ear pointing, tongue splitting, urethral rerouting, penile bisections, clitoridectomies, castration, flesh removal, scleral tattooing, PTFE and titanium implants and good old piercings and tattoos were firmly considered to be value-neutral expressions of personal/sexual/artistic freedom, as long as they were done in a sterile environment, with informed consent, and by a trained practitioner. It was extreme, and still a little controversial, but basically just “one end of the sliding scale” where having your ears pierced was the other end. We nodded, we read the long, technical ramblings about the legal and professional requirements for various types of modification, and moved on.

Now the word “Transabled” is coming up a lot more often, and it’s being linked to disability. And not just people cutting off limbs – There’s people asking to be paralysed (Like Chloe Jennings-White), or to be blinded (Like Jewel Shuping), and more still who use wheelchairs or canes or other accessibility tools for not-directly-physical reasons. I don’t think that the number of people has changed, necessarily, just that the narrative has changed from being one about body modification to being one about inherent identity. As, indeed, it might – I know plenty of modified people, myself included, who feel “just a bit wrong” if (for example) they’ve taken out their piercings or stopped dyeing their hair, and in the other direction I know at least a few modified people who felt “just a bit wrong” before being modified in the first place; The common refrain of “I always knew I’d end up covered in tattoos” is common for a reason. So it’s not unusual for discussions of identity and discussions of body modification to overlap (See “The Church Of Body Modification” for a potted example of how strange it can all get).

A lot of people seem to balk at the comparison of transability and being transgender – Usually along the lines of “Transability is just BIID, and is a mental illness, and being transgender is not a mental illness, we’ve already had that fight, we don’t need to have it again.” – and I understand the reticence. Being transgender is, well, hard enough as it is. But that’s the angle I end up thinking about it from; I’m trans, I’ve always* been trans (Though we can go back and forth until we’re both blue in the face over whether I’m innately non-binary and that people have always treated me as such because they saw that in me, or if I’m “not a woman” because everyone has always told me that I’m not) and it’s something that, when I think about it at all, is pretty keenly felt. Not being “out” to anyone wouldn’t make me cis, dressing up as a woman wouldn’t make me cis, using a girls’ name wouldn’t make me cis, they would all at most just make me miserable. It could be argued that, for example, a chest reconstruction is a long surgery, it’s a painful recovery, it’s risky, it doesn’t always result in the chest you planned for, and society will treat someone that doesn’t pass for cis even worse now that they no longer “automatically” pass as their birth-assigned gender. But nobody worth listening to would ever say “We should never offer top surgery, only counselling to make trans people happier in being stuck with whatever gender they were asigned at birth”.

And I wonder if the same is true for the transabled – Even if told to stay quiet, to never talk about wanting to be paralysed or blind or cut off a limb, they’d still be themselves. I see far too many commentors saying “They’re choosing to be disabled!” in a way that you’d never say to a transgender person “They’re choosing to not be cis!”

And this runs up against the other unpleasant implication – Bodily disabled people telling the transabled “You’re appropriating our experience!” sound a little bit like trans-exclusionary-feminists sometimes (For example, Germaine Greer, who links womanhood with having a vagina, or Julie Bindel, who claims that trans women are just men who want to invade women’s privacy and mock them).

I think if someone told me that they really believed that they should have EDS, if they were saving up to have their joint capsules surgically weakened, if they scrubbed their skin with glasspaper every morning to get that “being touched is painful” feeling and hoicked around on crutches and sat down suddenly every few minutes… I don’t know what I’d do. I’d certainly not hate them. I’d probably worry about them, on the practical level – Are they safe? Are they doing anything that would really cause them serious harm? Is there someone that they know and trust who can ensure that they’re not making rash decisions without thinking through the consequences?

But then this gets to another point – So, BIID or transability is talked about a lot in the sense of “An ablebodied person who believes they should be disabled”, but that kind of assumes another really unfortunate thing – That a disabled person’s body will always feel “right” to them. Indeed, I know that for a lot of us, probably the majority of us, it does, especially for people that’ve always had their disability. But much as the phantom pain in a phantom limb is unsettling, neither all nor no disabled people want to be ablebodied. I strongly suspect that the majority of people denouncing the transabled would assume that all disabled people want to be ablebodied, and indeed that’s a big theme in the comments as well; “I hope you meet someone with a real disability, so that you learn that being disabled is a pointless living hell”. Well, it’ isn’t, but also there are definitely a large number of disabled people who wouldn’t really want an abled body. They want society to be better adapted for their needs – Whether those be spatial, social, temporal – but they don’t want to be abled. Conversely, there are those of us who would bite your hand off to have an abled body, who wake up every morning feeling a deep sense of wrongness (“Why don’t my legs take my weight? How can’t I stir this cup of tea?”) and whose self-image and reality don’t match up even at the most basic level. From talking to people, the “answer” there seems to be a mixture of doing everything they can to get closer to being abled (at least on some axes, if not all – For example, someone may well accept the stairlift because it means they can get around the house without using a cane) and a long, solid grieving process over the body they don’t have.

I don’t know, I’m basically just full of morphine and rambling, but if there’s anyone with BIID or who is transabled who’s reading this, I’d love to hear from you. It’s a subject that I’m woefully ignorant on, and that the media and popular perception seems determined to take out of the hands of the people involved.

*Other than for about fourteen months around when I was nineteen. That was weird.